Monograph 26: Reducing Stigma and Discrimination for People Experiencing Problematic Alcohol and Other Drug Use

Project Aims
This project aimed to understand experiences of stigma and discrimination for people experiencing problematic alcohol and other drug (AOD) use in Queensland. Specifically, the research examined:
• Experiences of stigma and discrimination;
• The potential for legislation to be stigmatising;
• The settings and sectors in which stigma and discrimination occur;
• The impacts of stigma and discrimination on health and wellbeing and in particular on recovery and the ability to reconnect with the community; and
• Circumstances where stigma is not experienced, and evidence of what works to address stigma and discrimination.

In this report, stigma and discrimination are defined as follows:
Stigma is labelling and stereotyping of difference, at both an individual and structural societal level, that leads to status loss (including exclusion, rejection and discrimination).
Discrimination is the lived effects of stigma – the negative material and social outcomes that arise from experiences of stigma.
Both stigma and discrimination rely on societal structures and systems that facilitate and create the conditions for their operation (for example unequal power is one such condition).

In this project we sought to identify effective ways to reduce stigma and discrimination and provide recommendations derived from the research findings to support implementation actions by the Queensland government.

Methods
The project consisted of three interrelated components. These were:
1. Literature review;
2. Analysis of legislation; and
3. In-depth qualitative interviews and analytical case studies based on interviews.

The literature review involved analysing international and Australian research pertaining to: definitions of stigma and discrimination; manifestations and experiences of stigma; how stigma is experienced by people who use AOD; considerations of stigma and the law; and effective stigma-reducing interventions (drawing on findings from across the AOD, mental health and HIV/AIDS fields).

The analysis of Queensland legislation involved a three-step methodology to capture the full range of legislative provisions that deal with AOD in Queensland, establishing the focus of these provisions, and then examining the stigmatising and/or discriminatory potential of law.

Using in-depth qualitative interviews (N = 21) with people experiencing AOD problems in Queensland, the third component of the project involved documenting participants’ perceptions and experiences of how stigma presents and manifests (including positive experiences where it was not experienced) and identifying the settings and sectors where stigma and discrimination occurs in participants’ lives (including but not limited to health services, housing, justice, education and employment, other social support services and in the broader community). Analytical case studies were built using narrative techniques. Interview participants were recruited through treatment services and needle and syringe programs across Queensland.

Results
Identifying experiences of stigma and discrimination for people with problematic AOD use in Queensland:
• Experiences of stigma and discrimination were a common occurrence in the everyday lives of participants. Every participant could describe, in detail, multiple specific times that they had been judged, treated badly, looked down upon or excluded because of problematic AOD use;
• When participants were asked how experiences of stigma and discrimination made them feel, they described feelings of degradation, shame and anger;
• The frequency and commonplace nature of these experiences did not make them any less distressing for participants. These experiences had profound effects in participants’ lives. These effects were not superficial and cannot be dismissed as insignificant. Experiences of exclusion, marginalisation, and discrimination impacted on participants’ access to health care (including treatment) and other services, fair treatment in the justice system, employment opportunities, and relationships with family, friends and community;
• Stigma affected drug use. It did not discourage AOD use and was not a motivator for getting help. Many participants talked about how stigma and discrimination made them feel worthless and hopeless, which in turn triggered them to use alcohol or other drugs or give up on seeking change in their lives;
• Stigma was a barrier to help-seeking, even at times when participants had felt they really needed it. Experiences of stigma and discrimination at the moment of help-seeking (for example, from health care workers, doctors, psychologists, welfare services, or even AOD treatment providers) discouraged participants from seeking help again;
• Not all problematic AOD use was stigmatised in the same way. Some individuals felt that particular groups of people and behaviours were more stigmatised and marginalised than others, even amongst those with experience of problematic AOD use. This accords with what has been described in the literature as ‘within group’ stigma;
• Participants could also identify interactions and experiences where stigma had not been present. When participants spoke about these positive experiences, they felt understood and experienced a different kind of ‘care’. Being seen as a ‘normal’ patient in clinical settings, not as a ‘just a drug user’ or ‘just an alcoholic’ was particularly important. Positive experiences in work environments were characterised by employers being supportive of participants’ requests to take a leave of absence to seek help, pathways into support such as access to confidential counselling through employee assistance programs, and a sense that employers had their best interests at heart.

Identifying law that has the potential to be stigmatising:
• Queensland law was analysed with a view to assessing its stigmatising and/or discriminatory potential, which was defined for the purposes of this study as: the enabling conditions for the manifestation of stigma and/or discriminatory practices;
• The stigmatising potential of law is increased wherever the law isolates certain individuals, practices, activities and behaviours associated with AOD, enabling key stakeholders to exercise power and authority over them (including in ways that are potentially arbitrary or insufficiently defined), without sufficient protections for the target;
• A total of 222 provisions in Queensland were identified that were relevant in some way to people who experience problematic AOD use. A proportion of provisions in Queensland law have the potential to stigmatise and/or discriminate against people experiencing problematic AOD use;
• Relevant provisions appeared across 11 different areas of law, with provisions most often being found in the domains of: substantive criminal law, employment law and professional regulation, public health, and public order;
• Only 33% of provisions define the targeted practice, activity or behaviour, with the remainder of provisions targeting practices, activities or behaviours that are not defined. The lack of definitional precision and clarity is a problem, because it may allow for highly subjective and variable assessments to be made;
• The provisions convey decision-making powers and/or authority to a wide range of decision-makers, bodies and authorities. In some instances these decision-makers are familiar, highly trained and regulated (e.g. the police) but in others, powers are conferred upon private citizens and organisations who may be less familiar, well trained or well versed in the exercise of power (e.g. mining operators, employers, sellers of goods);
• The stigmatising and/or discriminatory potential of law was reduced when targets were offered protections in law. While most provisions provide some protections for the target, 30.94% do not;
• The stigmatising and/or discriminatory potential of law might be alleviated or reduced where the protections in individual provisions are included and strengthened, or where overarching legal protections are provided for people who use AOD (for example a Human Rights Charter or anti-discrimination protections).

Identifying settings where stigma occurs:
• Participants experienced stigma across a range of settings including health care, policing, employment, child services, courts, welfare and support services, as well as in relationships with family and friends, and in the general community;
• These experiences created inequitable barriers in the most fundamental aspects of people’s lives including health care, justice, family connection, employment opportunities, welfare, housing, and community belonging. Every participant could recall such experiences across multiple settings in their own lives, and described these experiences as being the norm;
• Drawing together findings from across the literature review, the analysis of legislation and the interviews, stigma and discrimination were found to most commonly and pervasively manifest in five specific settings: 1. Health care/public health; 2. Welfare and support services, including housing; 3. Police, public order and criminal law; 4. Employment; 5. Society at large.

Identifying ‘what works’ from the literature:
• Stigma-reducing interventions can be universal (addressing an entire population) or can be targeted and delivered in particular settings;
• Stigma-reducing interventions need to be focussed on both the social, political and economic causes of stigma, as well as on changing individuals’ discriminatory attitudes and behaviours;
• Approaches must be multifaceted to address the extensive mechanisms which produce discriminatory outcomes, but also multilevel to address issues of both individual and structural discrimination;
• Circumscribed interventions that target only one mechanism at a time are unlikely to bring about change because they fail to address broader contextual factors;
• Mass media interventions are ineffective for preventing drug use. Such campaigns aim to stigmatise drug use and create fear so as to deter drug use, and lead to further separation and stigmatisation of people who use drugs. Extreme and stigmatising depictions in such campaigns may prevent people from seeking help;
• Mass media campaigns aimed at reducing stigma may reduce prejudice, but there is insufficient evidence to determine their effects on discrimination;
• Educational interventions in schools have limited evidence as to their effectiveness;
• Community-based interventions have been designed to reduce stigma amongst the community closest to people affected by stigma and discrimination, for example amongst close family members, and aim to increase knowledge, and equalise the relationship between people and their families so as to reduce stigma and discrimination. Such programs in the HIV field have been shown to reduce experiences of stigma for people living with HIV and change the attitudes of people living close to them;
• Interventions for health professionals and service providers focus on changing the attitudes and behaviour of health care workers at an individual level, as well as addressing stigma and discrimination in health care settings at both interpersonal and structural levels. Changing professional behaviours that may stigmatise people can be accomplished by (1) increasing awareness of stigmatising aspects of clinical practice (e.g. being conscious of the power of diagnosis and labelling processes, rejecting negative outcome beliefs, and enhancing communication with clients), (2) meaningfully involving service users and family members, (3) taking on a public advocacy role in challenging stigma (and seeing this as part of the profession), and (4) campaigning at a policy level for adequate clinical resources and research in the field. The existing evidence on effectiveness of these interventions shows that workplace education without organisational support is ineffective;
• Interventions relating to treatment uptake focus on reshaping clients’ experience of the clinic or treatment service environment and holistically addressing health issues (rather than just focussing on AOD problems). In the HIV field, these types of interventions have been found to effectively reduce the fear and stigma experienced by clients, especially the fear of being ‘seen’ at the service, and have been shown to improve communication at the service;
• Interventions relating to internalised stigma seek to decrease the impact of stigma on individuals and enable coping by restructuring erroneous beliefs about perceptions of enacted stigma and increasing self-esteem. Such interventions have been shown to increase perceptions of self-efficacy to cope with stigma, decrease avoidance strategies and improve self-esteem and quality of life;
• Health conditions (such as hepatitis C and HIV/AIDS) come to be inextricably associated with (and as such bear the stigma of) illicit drug use. This suggests that interventions which seek to reduce the stigma associated with drug use ought to not only be directed towards drug and alcohol workers but also other health care providers in other fields;
• Involving people with lived experience of AOD use in policy and practice is an important ethical consideration and can help challenge discriminatory or uninformed opinions. Consumer participation should be ‘core business’ for treatment services, health services, and other welfare and social support services that regularly engage with people experiencing problematic AOD use;
• While much of the intervention literature has focussed on changing the attitudes and behaviours of individuals, the literature also shows that in order to bring about meaningful change structural factors must also be understood and addressed.

Recommendations for change:
The research findings led to 34 recommendations. Some of the recommendations focus on educating and changing the attitudes of individuals (for example practitioners), some focus on reforming legislation, and some focus on structural arrangements (such as organisational policies). For success, interventions aimed at ameliorating individuals’ discriminatory attitudes and behaviour need to be implemented alongside structural and systemic reforms aimed at addressing stigma and discrimination.